Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Lorene: No, we're talking about huge doses 500 -1000 + etc. The tiny amount of methionine in the zinc monomethionine is fine, and I give almost all my kids one of those at bedtime in addition to more zinc in the daytime usually in picolinate form. I like two different sources of zinc to make sure it goes in, it is so important to our kids. Dr. JM Re: Post-DAN! Update - Dear Dr McCandless, Thanks so much for this update- I have a question re methionine- how much is too much? I am using Zinc methionine as way to provde Zn, but each cap is about 70mg met and I am giving 3 a day. Do you think it could be a problem? What is the best way to provide Zn? I was using Zn picolinate, but then was told it was not good- Not sure any more- Can you clarify this issue for us? Thanks again so much Lorene/edinburgh -- In csb-autism-rx , " Jaquelyn McCandless " <JMcCandless@p...> wrote: > POST-DAN UPDATE: I have finally recovered enough from recent events to make an attempt to discuss some of the issues that came up at the most recent and most incredible DAN! conference, including some info from the Think Tank that you have been discussing on the lists. > > > > Genomic Testing: Researchers are very excited by this, and it will definitely be more helpful as more is learned by this process. However, there is inadequate evidence that we can as yet get any help with subtyping or treating autism with finding out SNPs (single nucleotide polymorphisms), so most of us clinical types (as opposed to the researcher types) still view genomic testing as research. However, if a parent insists on knowing any as yet known genetic bases for the problems and can accept an incomplete picture, it does no harm (except $$ which might be used for more directly helpful tests) to get this. The problem is, there are so many genomic variants out there that the incomplete SNP findings could be very deceiving as to appropriate therapy. To quote Dr. Pangborn: " Suppose both MTHFR SNPs are off, indicating that 5-meTHF ( " Folapro " ) is needed. But suppose that one or more other things is also wrong: methionine synthase reductase weakness, Hg stalling Met synthase, no Me-Cbl because glutathionylCbl is deficient, etc. In such cases, 5-meTHF can't be used because it has no place to go. (GSCbl or MeCbl might help.) " > > > > In other words, to have the complete picture that might guide appropriate therapy, we would need both MTHFRs, both GSH-S-transferases that Dr. Jill has found as problems, betaine-Hcy methyltransferase, probably methionine synthase reductase, definitely COMT, and for a few, the creatine transporter. And there may be some more common genomic variants out there. There is still a lot unknown but more information is coming in every day both from clinicians and researchers to help us with our complex little teachers. However, the stampede by some of you to get the genomic testing may not answer as many questions as you hoped for, and probably should be done when suggested by your doctor who knows how to best interpret it for you and may have a reason because of your child's clinical picture to get this particular testing. > > > > Creatine: The $64,000 question is: Does creatine cross the blood-brain barrier? Dr. Dick Deth and Dr. Green are working on this along with many others, and when the creatine transporter system is defective, creatine transport by passive diffusion is slow and requires a big concentration gradient. This means very large doses, how large, we don't know yet and it is being studied. Too much creatine if there is any hidden kidney problems is not good, and kids should be given a lot of water to drink when taking this nutrient. Doses to be effective may cause stomach distress. Also, if mercury is still in the brain, phosphorylation of the creatine is impaired, and no matter how much you give it will probably not be helpful as the deficiency is the phosphocreatine. This would imply that creatine would probably be more effective after chelation has been completed showing very little mercury output, but this is a conjecture and still needs to be studied. In other words, though we know creatine may be deficient in many of our kids' brains, the use of oral creatine has many issues that have not as yet been elucidated. I'll keep you posted as I find out more, and Tyrus is looking into a way to try to get this in by some other than the oral route so it might get to the brain more efficiently. > > Methylcobalamin: We have learned about even more benefits of the methylcobalamin than we knew at the last conference, and the evidence is that 90% of our kids benefit to some extent, some remarkably so, with injectable M-B12, and many of them without other treatments per Dr. Neubrander's experiment of giving it to children immediately when they first come see him and during awaiting the results of the other routine testing. I believe every child deserves an adequate trial of this treatment, and evidence so far is that other ways of getting it may be somewhat beneficial for a few kids, but the difference in the kids getting the injections is impressive. > > > > Methionine: I have been hearing of some bad reactions to large dose methionine, and asked Jon Pangborn about it. He feels that methionine in large doses is not a good idea for this reason: Methionine's metabolism gets stuck at SAM, and some then goes to methionine sulfoxide until the SAH-Hcy-Met synthase log jam is opened up (possibly by methylcobalamin). Methylation cannot be pushed by methionine when S-adenosylhomocysteine is elevated. SAM can't push it either; not until SAH is normalized. And after SAH is normalized, more recycle of Hcy to Met and more Met should occur, making large doses of Met unnecessary. Methionine acts as a reducing agent, but bottom line is: there are lots of safer antioxidants like vitamin C and GSH. > > I would suggest this not be used unless your doc recommends and supervises it. > > > > Best wishes to all! Dr. JM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 - Dear Dr McCandless, Thanks so much for this update- I have a question re methionine- how much is too much? I am using Zinc methionine as way to provde Zn, but each cap is about 70mg met and I am giving 3 a day. Do you think it could be a problem? What is the best way to provide Zn? I was using Zn picolinate, but then was told it was not good- Not sure any more- Can you clarify this issue for us? Thanks again so much Lorene/edinburgh -- In csb-autism-rx , " Jaquelyn McCandless " <JMcCandless@p...> wrote: > POST-DAN UPDATE: I have finally recovered enough from recent events to make an attempt to discuss some of the issues that came up at the most recent and most incredible DAN! conference, including some info from the Think Tank that you have been discussing on the lists. > > > > Genomic Testing: Researchers are very excited by this, and it will definitely be more helpful as more is learned by this process. However, there is inadequate evidence that we can as yet get any help with subtyping or treating autism with finding out SNPs (single nucleotide polymorphisms), so most of us clinical types (as opposed to the researcher types) still view genomic testing as research. However, if a parent insists on knowing any as yet known genetic bases for the problems and can accept an incomplete picture, it does no harm (except $$ which might be used for more directly helpful tests) to get this. The problem is, there are so many genomic variants out there that the incomplete SNP findings could be very deceiving as to appropriate therapy. To quote Dr. Pangborn: " Suppose both MTHFR SNPs are off, indicating that 5-meTHF ( " Folapro " ) is needed. But suppose that one or more other things is also wrong: methionine synthase reductase weakness, Hg stalling Met synthase, no Me-Cbl because glutathionylCbl is deficient, etc. In such cases, 5-meTHF can't be used because it has no place to go. (GSCbl or MeCbl might help.) " > > > > In other words, to have the complete picture that might guide appropriate therapy, we would need both MTHFRs, both GSH-S-transferases that Dr. Jill has found as problems, betaine-Hcy methyltransferase, probably methionine synthase reductase, definitely COMT, and for a few, the creatine transporter. And there may be some more common genomic variants out there. There is still a lot unknown but more information is coming in every day both from clinicians and researchers to help us with our complex little teachers. However, the stampede by some of you to get the genomic testing may not answer as many questions as you hoped for, and probably should be done when suggested by your doctor who knows how to best interpret it for you and may have a reason because of your child's clinical picture to get this particular testing. > > > > Creatine: The $64,000 question is: Does creatine cross the blood-brain barrier? Dr. Dick Deth and Dr. Green are working on this along with many others, and when the creatine transporter system is defective, creatine transport by passive diffusion is slow and requires a big concentration gradient. This means very large doses, how large, we don't know yet and it is being studied. Too much creatine if there is any hidden kidney problems is not good, and kids should be given a lot of water to drink when taking this nutrient. Doses to be effective may cause stomach distress. Also, if mercury is still in the brain, phosphorylation of the creatine is impaired, and no matter how much you give it will probably not be helpful as the deficiency is the phosphocreatine. This would imply that creatine would probably be more effective after chelation has been completed showing very little mercury output, but this is a conjecture and still needs to be studied. In other words, though we know creatine may be deficient in many of our kids' brains, the use of oral creatine has many issues that have not as yet been elucidated. I'll keep you posted as I find out more, and Tyrus is looking into a way to try to get this in by some other than the oral route so it might get to the brain more efficiently. > > Methylcobalamin: We have learned about even more benefits of the methylcobalamin than we knew at the last conference, and the evidence is that 90% of our kids benefit to some extent, some remarkably so, with injectable M-B12, and many of them without other treatments per Dr. Neubrander's experiment of giving it to children immediately when they first come see him and during awaiting the results of the other routine testing. I believe every child deserves an adequate trial of this treatment, and evidence so far is that other ways of getting it may be somewhat beneficial for a few kids, but the difference in the kids getting the injections is impressive. > > > > Methionine: I have been hearing of some bad reactions to large dose methionine, and asked Jon Pangborn about it. He feels that methionine in large doses is not a good idea for this reason: Methionine's metabolism gets stuck at SAM, and some then goes to methionine sulfoxide until the SAH-Hcy-Met synthase log jam is opened up (possibly by methylcobalamin). Methylation cannot be pushed by methionine when S-adenosylhomocysteine is elevated. SAM can't push it either; not until SAH is normalized. And after SAH is normalized, more recycle of Hcy to Met and more Met should occur, making large doses of Met unnecessary. Methionine acts as a reducing agent, but bottom line is: there are lots of safer antioxidants like vitamin C and GSH. > > I would suggest this not be used unless your doc recommends and supervises it. > > > > Best wishes to all! Dr. JM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Another important point dwells within the Jill findings about alleles. At the " dc " DAN! Jill presented a slide I haven't found in the Syllabus. My hunch is that she added the slide after the syllabus was printed and after the think tank. In that slide, Dr. offered that many of the (methionine-related) pathologies can be " nutritional or genetic " . This is a crucial realization. Many of the pathways that excite the biochemists and molecular geneticists among the DAN!sters are pathways that are very dependent upon the availablity of proper nutrients. Suboptimal nutritional status can mimic weak-alleles even if the child's alleles are OK. GSH provides an example that illustrates pathways which can be acquired and/or genetic. For example, a child with autism-associated gi-pathology may have suboptimal amino acids and, presumably, suboptimal GSH-cobalamin as well as immunity and detoxification impairments caused by suboptimal levels of AAs necessary for GSH synthesis and availability. IMO, the phrasings " nutritional and/or genetic " or " acquired and/or genetic " are similar. Each such phrase is preferable to the oft stated by incorrect notion that an autistic child (necessarily) has such predisposing alleles. Given the hugely important but rather " soft " genetic findings about alleles (eg, MTHFR), we need admit that many individuals with no identified weak-alleles in methionine-related pathways are autistic (and may respond to treatments that affect methionine-related pathways), even as many individuals with such alleles identified by PCR are not autistic. Regardless of theories and research findings about groups, each autistic child is a unique individual and may differ in crucial ways from group trends in regard to biomarkers and responses to specific treatments. In the very least, the genetics findings are validating the pathways (eg, biochemical reactions dancing about methionine synthase), even as the pathways can be affected by nutritional and/or genetic glitches. And the nutritional deficit aspect gives physiological significance to the range of gi pathology that is found in so many autism-spectrum kids. When nutrients are sufficiently suboptimal, especially when environmental toxins and/or infectious critters are encountered, then the child has impaired detox and impaired immunity, and we meet each other on lists such as this. Jaquelyn McCandless had written: > POST-DAN UPDATE: I have finally recovered enough from recent events > to make an attempt to discuss some of the issues that came up at the > most recent and most incredible DAN! conference, including some info > from the Think Tank that you have been discussing on the lists. > > > > Genomic Testing: Researchers are very excited by this, and it will > definitely be more helpful as more is learned by this process. > However, there is inadequate evidence that we can as yet get any help > with subtyping or treating autism with finding out SNPs (single > nucleotide polymorphisms), so most of us clinical types (as opposed to > the researcher types) still view genomic testing as research. > However, if a parent insists on knowing any as yet known genetic bases > for the problems and can accept an incomplete picture, it does no harm > (except $$ which might be used for more directly helpful tests) to get > this. The problem is, there are so many genomic variants out there > that the incomplete SNP findings could be very deceiving as to > appropriate therapy. To quote Dr. Pangborn: “Suppose both MTHFR SNPs > are off, indicating that 5-meTHF (“Folapro”) is needed. But suppose > that one or more other things is also wrong: methionine synthase > reductase weakness, Hg stalling Met synthase, no Me-Cbl because > glutathionylCbl is deficient, etc. In such cases, 5-meTHF can’t be > used because it has no place to go. (GSCbl or MeCbl might help.)” > > > > In other words, to have the complete picture that might guide > appropriate therapy, we would need both MTHFRs, both > GSH-S-transferases that Dr. Jill has found as problems, > betaine-Hcy methyltransferase, probably methionine synthase reductase, > definitely COMT, and for a few, the creatine transporter. And there > may be some more common genomic variants out there. There is still a > lot unknown but more information is coming in every day both from > clinicians and researchers to help us with our complex little > teachers. However, the stampede by some of you to get the genomic > testing may not answer as many questions as you hoped for, and > probably should be done when suggested by your doctor who knows how to > best interpret it for you and may have a reason because of your > child’s clinical picture to get this particular testing. > > > > Creatine: The $64,000 question is: Does creatine cross the > blood-brain barrier? Dr. Dick Deth and Dr. Green are working on > this along with many others, and when the creatine transporter system > is defective, creatine transport by passive diffusion is slow and > requires a big concentration gradient. This means very large doses, > how large, we don’t know yet and it is being studied. Too much > creatine if there is any hidden kidney problems is not good, and kids > should be given a lot of water to drink when taking this nutrient. > Doses to be effective may cause stomach distress. Also, if mercury is > still in the brain, phosphorylation of the creatine is impaired, and > no matter how much you give it will probably not be helpful as the > deficiency is the phosphocreatine. This would imply that creatine > would probably be more effective after chelation has been completed > showing very little mercury output, but this is a conjecture and still > needs to be studied. In other words, though we know creatine may be > deficient in many of our kids’ brains, the use of oral creatine has > many issues that have not as yet been elucidated. I’ll keep you > posted as I find out more, and Tyrus is looking into a way to try to > get this in by some other than the oral route so it might get to the > brain more efficiently. > > Methylcobalamin: We have learned about even more benefits of the > methylcobalamin than we knew at the last conference, and the evidence > is that 90% of our kids benefit to some extent, some remarkably so, > with injectable M-B12, and many of them without other treatments per > Dr. Neubrander’s experiment of giving it to children immediately when > they first come see him and during awaiting the results of the other > routine testing. I believe every child deserves an adequate trial of > this treatment, and evidence so far is that other ways of getting it > may be somewhat beneficial for a few kids, but the difference in the > kids getting the injections is impressive. > > > > Methionine: I have been hearing of some bad reactions to large dose > methionine, and asked Jon Pangborn about it. He feels that methionine > in large doses is not a good idea for this reason: Methionine’s > metabolism gets stuck at SAM, and some then goes to methionine > sulfoxide until the SAH-Hcy-Met synthase log jam is opened up > (possibly by methylcobalamin). Methylation cannot be pushed by > methionine when S-adenosylhomocysteine is elevated. SAM can’t push it > either; not until SAH is normalized. And after SAH is normalized, > more recycle of Hcy to Met and more Met should occur, making large > doses of Met unnecessary. Methionine acts as a reducing agent, but > bottom line is: there are lots of safer antioxidants like vitamin C > and GSH. > > I would suggest this not be used unless your doc recommends and > supervises it. > > > > Best wishes to all! Dr. JM > > > > > > Autism Biomedical Discussion (abmd) is a group of parents and > professionals dedicated to the exploration and pursuit of biomedical > research and treatments for children with autism. Any comments made > during the course of normal list discussions are for informational > purposes only and should never replace medical treatment or diagnosis. > No matter how strongly you might disagree with information shared by > another list member, it is mandatory that all exchanges on list be > carried out with courtesy and respect. > Thank you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 I believe if you are under the care of a doc you respect and your child is doing well, there's no need to worry. I just didn't want parents who are not under the care of a doc to hear about this and start giving large doses of something without supervision that might not do well in their child. Your doc knows your child and has testing results; his/her advice is based on that and is obviously right for your child. Dr. JM Re: Post-DAN! Update Dear Dr. McCandless, My two sons, 3 and 7, are under the care of a nationally known DAN doc and are both taking Methionine, 500 mg and 1000 mg per day respectively, divided doses. I have not seen any negative reactions since the introduction of this supplement. They are both very high functioning, the oldest is indistinguishable from typical peers, the youngest is still quite delayed in language and play skills. I continually struggle with deciding the best course in supplementation, i.e., too much, too risky, vs. we're not doing enough to give them every thing they need. I am very comfortable that the rest of their protocols pose no undue risk (gf/cf diet, MB12, TMG, NAC, Brainchild multi, cal-mag, probiotics, flax oil, Eskimo-3, Authia, Learner's Edge combos, enzymes, zinc), but your notes about Methionine have caused me concern. Since they are under a very good DAN doctor's care and have not shown any negative reactions to the methionine, would you say I should not worry about the methionine, or would you still tend to prefer another antioxidant? I don't mean to ask you to second guess another doctor or my childrens' treatment protocols, I guess I'm just trying to gain a little more information so I can make the best decision I can for my kids. Thank you for any other input you care to share about methionine. > POST-DAN UPDATE: > > Methionine: I have been hearing of some bad reactions to large dose methionine, and asked Jon Pangborn about it. He feels that methionine in large doses is not a good idea for this reason: Methionine's metabolism gets stuck at SAM, and some then goes to methionine sulfoxide until the SAH-Hcy-Met synthase log jam is opened up (possibly by methylcobalamin). Methylation cannot be pushed by methionine when S-adenosylhomocysteine is elevated. SAM can't push it either; not until SAH is normalized. And after SAH is normalized, more recycle of Hcy to Met and more Met should occur, making large doses of Met unnecessary. Methionine acts as a reducing agent, but bottom line is: there are lots of safer antioxidants like vitamin C and GSH. > > I would suggest this not be used unless your doc recommends and supervises it. > > > > Best wishes to all! Dr. JM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 Dear Dr. McCandless, My two sons, 3 and 7, are under the care of a nationally known DAN doc and are both taking Methionine, 500 mg and 1000 mg per day respectively, divided doses. I have not seen any negative reactions since the introduction of this supplement. They are both very high functioning, the oldest is indistinguishable from typical peers, the youngest is still quite delayed in language and play skills. I continually struggle with deciding the best course in supplementation, i.e., too much, too risky, vs. we're not doing enough to give them every thing they need. I am very comfortable that the rest of their protocols pose no undue risk (gf/cf diet, MB12, TMG, NAC, Brainchild multi, cal-mag, probiotics, flax oil, Eskimo-3, Authia, Learner's Edge combos, enzymes, zinc), but your notes about Methionine have caused me concern. Since they are under a very good DAN doctor's care and have not shown any negative reactions to the methionine, would you say I should not worry about the methionine, or would you still tend to prefer another antioxidant? I don't mean to ask you to second guess another doctor or my childrens' treatment protocols, I guess I'm just trying to gain a little more information so I can make the best decision I can for my kids. Thank you for any other input you care to share about methionine. > POST-DAN UPDATE: > > Methionine: I have been hearing of some bad reactions to large dose methionine, and asked Jon Pangborn about it. He feels that methionine in large doses is not a good idea for this reason: Methionine's metabolism gets stuck at SAM, and some then goes to methionine sulfoxide until the SAH-Hcy-Met synthase log jam is opened up (possibly by methylcobalamin). Methylation cannot be pushed by methionine when S-adenosylhomocysteine is elevated. SAM can't push it either; not until SAH is normalized. And after SAH is normalized, more recycle of Hcy to Met and more Met should occur, making large doses of Met unnecessary. Methionine acts as a reducing agent, but bottom line is: there are lots of safer antioxidants like vitamin C and GSH. > > I would suggest this not be used unless your doc recommends and supervises it. > > > > Best wishes to all! Dr. JM > > > > > > Quote Link to comment Share on other sites More sharing options...
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